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Thu, 22 Feb 2018 05:01:01 +0000enhourly1http://wordpress.com/https://s2.wp.com/i/buttonw-com.pngSalted Brownieshttps://saltedbrownies.com
To my fellow improvisers in Torontohttps://saltedbrownies.com/2017/06/02/to-my-fellow-improvisers-in-toronto/
https://saltedbrownies.com/2017/06/02/to-my-fellow-improvisers-in-toronto/#respondFri, 02 Jun 2017 21:21:49 +0000http://saltedbrownies.com/?p=691I signed up for my first classes at Second City a bit over a year ago. I was still in the midst of recovering from surgery, but I was stronger and healthier than I had been in years and was itching to get back into the arts. I also was relatively new to Toronto and, having been mostly bed bound for the last few years, my social circle wasn’t exactly broad. I figured that a short term class with a flexible makeup policy was the perfect way to ease back into the world on multiple levels.

I was planning to just sign up for a writing class, but when I went to check out online, I saw that there was a multi-class discount. I desperately wanted to try improv, but I was nervous that I wouldn’t be up for it physically. Still, on a spur of the moment decision, I added improv level A to my cart and then spent the following weeks leading up to the class panicking about what I had gotten myself into.

In a previous post I wrote about the challenges of transportation within the city. At the time of this story, however, I was often well enough to take the subway. I wore my neck brace, but didn’t need a walker. Because of that, I wasn’t too concerned about issues of accessibility. But when I arrived at the Second City training centre and saw that their elevator wasn’t functional, I started to feel the stirrings of panic. My class was on the 3rd floor and it was starting in 5 minutes.

Determined, I started up the stairs. I had to pause multiple times, sweating, short of breath, and feeling my heart rate and blood pressure respond in all sorts of fun ways to the torture I was putting it through, knowing that I would be arriving, exhausted, with my symptoms already flared, to a 3 hour improv class with complete strangers that I was already unsure I’d be able to manage.

Finally, I made it up. I staggered into my class, late and self conscious. Luckily, it was a hot day, so everyone else was sweating too.

After the class, I sat on a bench outside, needing to rest halfway through the 600 meter walk to the subway. I called my parents who were anxiously waiting to hear if I was still alive and told them that it was true, that the class was way too much for me physically. I told them that there were issues I hadn’t even thought to anticipate, like me not being able to turn my head, or get down on the ground, or lift my arms up high. But I also told them that I loved every second of it, and was determined to make it work.

Between my first and second class I was more symptomatic than I had been since before my surgery. My whole body was in excruciating pain, and I spent most of week in bed, desperately hoping to recover enough to make it to the next class.

As the term went on, however, my body started to get used to what I was putting it through. Not only that, but I started to make big strides in terms of my recovery. Games like clap focus and word association helped me with the cognitive impairments I had been dealing with. I was suddenly able to keep track of conversations and sounds in ways that I hadn’t been able to in years. Other games like freeze, along with the need to climb up stairs to reach my class helped me improve my physical strength and stamina. At the end of the term I happily signed up for level B.

I started to dream about future possibilities. I had grieved over my performance career years earlier when I knew I was dealing with a lifelong illness, and thought I had come to terms with the loss, but I was realizing that with the combination of my newly improved health post surgery and the flexibility of improv, not to mention my love for the art form and all things comedy, this might be something that I could actually pursue.

In my first week of level C the elevator up to the training centre was fixed which turned out to be very timely. My symptoms had started to worsen again and that very week, on my way home from class, I fell and my ankle turned into a bowling ball that, 7 months later, still hasn’t completely healed.

I arrived at my next class with an air cast and a cane and tried my hardest to participate from a chair. Luckily I had an incredible teacher at the time who went out of his way to include me.

With the help of a walker, I made it through levels C and D, and I graduated to a cane in level E. I was getting more and more immersed in comedy and improv, but I started to run into roadblocks. I wanted to go and see shows. My friends would go out together, finding workshops and jam sessions and watching our teachers perform at Bad Dog, SoCap, and Comedy Bar. Every class began with a discussion about the improv we had seen that week. And I’d sit quietly, with nothing to offer, because I hadn’t seen any shows. I couldn’t. None of the venues hosting them were accessible. I was, and am, barred from these spaces, these shows.

Conservatory auditions were looming and I wanted to audition, but I wasn’t sure how to go about it. A-E classes were one thing, but conservatory was serious. It was a dream. But was it even possible for me, with my fluctuating levels of ability? Could I be on stage with a cane or walker? Could I even physically get to the stage if I couldn’t do the stairs? And could I allow myself to take improv and comedy seriously, considering I couldn’t even physically enter the majority of comedy venues in Toronto?

My extremely supportive and wonderful level E teacher assured me that improv is for everyone, so I auditioned. To my surprise and elation, I got in.

So now I’m in Con 1. It’s amazing. I leave every week feeling challenged and excited and I can’t wait to continue learning and playing with the amazing individuals in my class. And I consider myself so, incredibly, lucky to have the opportunity to learn at Second City.

But guys, I want to be able to learn at other places too. I want to be able to see other shows. I want to be able to participate in other jams and perform across the city and support my friends and experience the amazing improv scene that exists in Toronto.

And more than that, I want improv to truly be accessible for everyone. I can’t imagine how many other people are out there in this city who might find a home for themselves in improv, both in the audience and on stage. People with interesting and unique POV’s and physical quirks who can add to the art form. People who can benefit from it, like I have. People who currently don’t even entertain the idea, because they have never been able experience it live in the first place.

We’re a community of problem solvers. Of yes, and-ers. So let’s get on this, okay?

Love,

Ophira

]]>https://saltedbrownies.com/2017/06/02/to-my-fellow-improvisers-in-toronto/feed/0220px-spiral_stairs_28d181d0bfd0b8d180d0b0d0bbd0bdd0be_d181d182d0b5d0bfd0b5d0bdd0b8d188d182d0b529saltedbrowniesSpringtimehttps://saltedbrownies.com/2017/04/29/springtime/
https://saltedbrownies.com/2017/04/29/springtime/#commentsSat, 29 Apr 2017 21:18:08 +0000http://saltedbrownies.com/?p=685I haven’t written in a while. First I was too unwell to write, and then too well, becoming busy with other pursuits. And then I felt that I had already written about what I wanted to say. I’ve written countless posts about perception, fluctuating symptoms, and invisible and visible disabilities. I’ve talked about doctor-patient interactions, accessibility, and transportation. I’ve talked about the process of searching for a diagnosis and then getting one, and I’ve talked about surgery and recovery. What more is there to say?

But of course, there’s always something more. There are always new experiences and perspectives. We don’t live in a static world – the only constant we have is change.

And since I last posted, things have definitely changed. The change has been slow and gradual, creeping up behind me. Or maybe it hasn’t been subtle at all and I’ve been refusing to acknowledge its presence.

It can be scary to acknowledge change. Scary when it’s hard, but also scary when it’s positive.

When you’re at the bottom of a pit, there’s no place to fall. And that can be comforting. It’s easy to dream from a place with no risk.

But as soon as you begin to climb out of the pit, suddenly your instincts scream at you to be cautious. Because now there’s something to lose. And the higher you climb, the more crushing the fall.

The past two weeks have been a whirlwind. I had my first audition in 5 years. I performed in a show. I received the master copy of my first single – the details of which will be coming soon. I applied for a scholarship and a degree program. I gave a speech and sang the national anthem at a beautiful fundraising event.

And in the coming weeks I’ll be filming a video for the first time. I’ll have my first class of Second City’s year long Conservatory Program. I’ll be moving apartments. I’ll be launching an incredibly exciting fundraising campaign – the details will be coming soon for that as well.

I feel like I’m caught in the middle of a beautiful and terrifying storm, wide eyed and unsure of how exactly I got here.

Everything feels like it’s happened so suddenly. But of course, it hasn’t. It’s happened gradually over the last year and a half since my surgery, as I’ve slowly found my new normal and built a life around it. It’s happened over the past 4 years, since I finally realized that I would have to reevaluate my goals and dreams for the future. It’s happened over the past 6 years, since my symptoms first took over my life. It’s happened over the past 23 years as I’ve lived, experienced, learnt, and grown, and it’s happened because of the wonderful people who have helped me along the way.

There are some big things coming up next month and I can’t wait to share them with you.

I sometimes talk about the people in my life in a broad sense – partly to avoid violating anyone’s privacy and partly because, frankly, in the years that I’ve been writing this blog, I’ve spent a lot of time alone.

Most of that has been due to living with chronic illness, but I recently came across an old piece of homework where a 7 year old me scrawled that my friends were golden and as rare as pink diamonds. So I suppose nothing’s changed in the past 16 years, besides the fact that I’m not nearly as poetic as I used to be.

This week, however, I need to talk about my friends. Because this week has been on the harder side, but every single moment I started to feel overwhelmed, someone stepped in, and turned it around.

Over the past week I received two packages in the mail, from two different individuals who both fall perfectly into my grade one description of being both golden and as rare (and as special, valuable, beautiful and strong) as pink diamonds. They didn’t know I was having a rough week. They put these lovely, thoughtful, perfect gifts and letters in the mail before the week even began. But just when I needed them most, I opened my mailbox and there they were, completely brightening up my day.

So many other gifts came from friends this week in a variety of forms – a compliment when I was feeling inadequate, a reassurance and new perspective when I was feeling trapped, a ticket bought on my behalf when I was rushed, a text saying hi when a migraine was beginning to overtake me, wonderful visits full of patience when I started to ramble in circles, and genuine belief in, and offers to help with, projects that were beginning to feel out of my control.

And while it would paint me as a wonderful, mature human being to say that I received this kindness and support because I was enough of an adult to admit that I was having a bit of a hard time, the reality is that I said nothing. I didn’t communicate effectively, and as a result, had absolutely no expectation of anyone stepping in.

But time and time again over the past week, my friends have unknowingly saved me. So I want to take this space to acknowledge how absolutely golden they are, and to thank them for being the pink diamonds in my life.

I say it every time someone helps lift my walker in and out of a car. Every time someone holds the door open a little longer, to give me the chance to reach it. When people shift their chairs to make a path that my walker can fit through. When someone holds something for me, or guides me to the elevator in a building.

‘I’m so sorry- thank you so much.’

Even typing out the phrase brings a certain feeling of unease, of discomfort. When I speak those words, I speak them with more than a passing degree of desperation – they aren’t simply polite. They are an embarrassed apology and a desperate plea for forgiveness.

When they land on my lips I search for eye contact, for some sort of a connection, and then hastily lower my eyes.

There is nothing perfunctory about the exchange, and yet I say it more often than anything else. And it doesn’t matter whether or not the recipient of my words expresses irritation. There is nothing that they could do, or avoid doing, that would make my shame and desperation disappear. My feelings aren’t correlated to their words.

My feelings come from a lifetime of being told not to be difficult. Difficult, I learned, can mean being assertive, otherwise known as bossy or a know-it-all. Difficult can mean reserved, or reluctant to participate with the proper enthusiasm. Difficult can mean standing out. Difficult can simply mean different.

We are taught as kids to reach for the moon, to shine, to find and follow our passions. But from a very young age we learn how important it is to fit in. So in a sea of blue we might aspire to be the deepest navy or the most delicate periwinkle, but we certainly don’t want to be green.

If we stick out, it needs to happen within a certain framework. So I say sorry. I apologize for being different. I apologize for not fitting in the box the way I should. For requiring people to shift around me as I try to insert myself into their world, because mine doesn’t seem to exist. I apologize for needing others to accommodate my presence.

And I say thank you. I try to express my gratitude fervently enough to break past any resentment or frustration, whether expressed or not. I try to be so appreciative that the task becomes less onerous. That my existence doesn’t detract too much from anyone’s day.

Do I really think that I need to justify myself in this way? Do I really think that my presence is such a disruption that I have to constantly apologize for it, and be endlessly grateful to others for accommodating it? Is taking up space so wrong?

While I want to loudly yell ‘no’, complete with a fist pump, I can’t. Because enough of me believes that the answer is yes.

To me, that’s a problem. I don’t think it’s right or fair and I hate that a part of me thinks that way. I want to change it.

So here goes.

Thank you so much for reading this post. I hope you found something in it that resonated with you. If not, that’s okay. I’m still appreciative that you read it.

I do not apologize for this post. I do not apologize for typing out my words. I do not apologize for the time it took you to read them. I do not apologize for taking up space.

And while that felt uncomfortable to type out, and while I erased and re-typed the words twice, worried that I was coming across too aggressive, too whiny, too much, I think that’s why I need to say it.

A synonym for accommodation is adaptation – to adjust to new conditions.

Life would be pretty boring if there were never any new conditions, and it would be rather alarming if we didn’t try to adjust to them.

None of us are immune to the need for accommodation, and none of us are exempt from providing it both for each other, and for ourselves.

So from now on, I’m going to try to stick to the Canadian version of ‘sorry’ — a polite and versatile exclamation with none of the angst. And I will endeavour to keep my thanks simple, genuine, and devoid of shame.

Thank you.

]]>https://saltedbrownies.com/2017/01/08/the-things-we-say/feed/1sorry-final-1600x720saltedbrowniesLast Monday Evening – A Storyhttps://saltedbrownies.com/2016/12/14/last-monday-evening-a-story/
https://saltedbrownies.com/2016/12/14/last-monday-evening-a-story/#respondWed, 14 Dec 2016 14:21:53 +0000http://saltedbrownies.com/?p=613Last Monday evening I had my regularly scheduled writing class downtown at Second City, here in Toronto. Before I injured my ankle, I would simply hop on the subway that’s right up the street from my apartment, take it downtown, and then walk about 10-15 minutes to get to class. The whole process took just under an hour and was relatively painless.

But all of the entrances and exits to the subway require at least 2 flights worth of stairs – impossible with my walker. There are elevators available, but they require about 20 extra minutes of walking within each station, as you weave in and out of multiple buildings, each elevator taking you up or down only a single level. As someone who experiences fatigue and balance issues due to Ehlers Danlos Syndrome that are currently being exacerbated by an injury, not only does this process take up excessive amounts of my time, but it also exhausts me and is unsafe for me to undertake, especially alone. My medical professionals have stated that at this point, the subway is most definitely not an option for me.

So I look to Wheel-Trans – the accessible public transportation here in Toronto. Although there is a rather laborious interview process to be permitted to use the service, I am eligible. So I look to book a ride. The thing is, you can’t simply book a direct trip. You have to choose a half hour window for your destination arrival time, and it is strongly recommended that you leave an additional half hour window before the time you actually have to be there in order to guard against delays. So, for my class at 7 PM, I have to book a ride that will arrive at the location between 6 and 6:30 PM.

I then have to decide what time I want to be picked up afterwards, as all Wheel-Trans trips are round trip. My class is supposed to end at 10, but often will run at least 5-10 minutes late. The car will only wait 2 minutes for me, so I have to be sure I’ll be ready. To be safe, I have to request that my pickup time be between 10:30 and 11 PM.

Then I look to see what time I will be picked up for the first trip. It gives me another half hour window. The window is from 4 to 4:30 PM. Because, you see, Wheel-Trans will not take me directly to and from my destination. It operates in a similar way to a ride-share, and multiple people will be picked up and dropped off at their locations during the course of my trip.

And even this is only possible if I book the ride far enough in advance. Any requests for rides within 24 hours are unlikely to be available.

So, with everything going as smoothly and successfully as possible – I’m looking at having to book off my day from at least 4 PM until midnight – a minimum of 8 hours, a complete workday, for a single 3 hour class.

I can’t express strongly enough how unacceptable that is. I don’t have that kind of time to waste. I don’t know anyone who does.

So I use uber to get to class. It costs me $20 – much more than the $3.25 of the bus, but less than the $40 of a regular taxi.

When I arrive at the building I sit on my walker and wait outside for somebody to come by and let me in. The regular door can only be opened from inside and my walker doesn’t fit through the rotating door.

Once I’m in class, it doesn’t get much easier. I’m the only one with a walker. I’m still getting used to it. Where to put it, how to move with it, how to talk about it. I feel self conscious and uncomfortable. I don’t fit. On top of that I’m trying to take notes with sore and stiff hands. I’m trying to maintain my posture in shitty plastic chairs. And still I’m trying to focus, participate and learn.

After class, everyone decides to go out for drinks. And I can go, because at least with uber I have the flexibility of ordering a car whenever I’m ready to go home. I can’t drink, but I can sit with them, get to know them better, and be part of the group.

But then I find out – the bar’s on the second floor of a building. We call, and there’s no elevator. I can’t go.

So I go outside and sit on my walker. I order an uber and spend another $20 to get home, knowing that I won’t be able to go to the show that everyone else is planning to see on the weekend, because it simply costs too much to get there and back. My outings are primarily reserved for essentials like class and doctors appointments.

And still, I consider the night a success. A year ago, I wouldn’t have been able to make it to or through the class. And I love the class. I’m excited about what I’m learning. I’m motivated and inspired, and so happy to get the chance to meet and work with my wonderfully talented classmates.

And I’m making strides. I’ve made it halfway through Second City’s writing and improv training programs. My improv class had our first show a couple of weeks ago and it was an absolutely incredible experience. And even though the venue was highly inaccessible, my teacher and classmates were unbelievably supportive, helping to carry my walker up and down stairs, and enabling me to perform.

Overall, I consider myself to be very lucky. I’m lucky that I can afford to take uber in the first place and leave my apartment at all. I’m lucky that I’m physically well enough to take these classes and that I have access to such amazing programs here in Toronto. I’m lucky that I’m getting the chance to pursue what I want to do, to train and improve and forge ahead.

Sill though, it’s a struggle. Every time I leave my apartment it’s a confrontational act, as I have to force my way through the basic structure of an environment that is not designed for me. I am inserting myself where I am not expected, anticipated, or planned for. And it’s wearing. I don’t like fighting. I don’t like aggression. And it shouldn’t be this hard for me to navigate this world and live my life.

But right now, that’s the way it is – for me, and for so many others. Others that we never see, because they don’t have the resources to fight their way out and into the world. And ultimately, that’s what makes this struggle so important and so worthwhile.

It’s something that tends to happen every couple of months for about a week or two. I don’t leave my apartment for several days in a row. I feel overwhelmingly fatigued, achey, and have trouble focusing. I avoid writing back to friends or making new plans, because I just don’t feel up to it. My only contact with other people happens over the phone or computer. I notice nests of dirty dishes being built around me, and I feel very isolated and alone.

Just as I start to grow concerned, I typically realize that I’m actually in the midst a symptom flare which only becomes obvious when I attempt to do something other than move from my bed to my couch.

So I take the time for some good old fashioned TLC and then, if and when things start improving, I push myself out the door and back into my regular life.

Often, this fun process is triggered by hormonal or weather changes, but it can also happen if I’ve pushed myself too hard, or for mental health reasons. The catch is that, whatever caused it, hermitting can lead me to develop issues in pretty much every sphere by being alone and inactive, regardless of what triggered it in the first place.

This time, a number of things contributed my current struggle. I pushed myself way too hard doing exciting things like speaking at the ILC conference on EDS (which was pretty amazing and I’ll be writing more about it another time), as well as singing at a small studio recital – my first time singing in public in almost four years! These events were absolutely incredible, but they did take a lot out of me, which was complicated by the fact that I’ve been dealing with muggle sickness for almost 2 months now on top of my usual chronic symptoms.

If you haven’t read Harry Potter, or if you have, but still have no idea what I mean – I consider muggle sickness to be the kind of normal, everyday issues that people who are generally considered to be ‘healthy’ deal with. Things like the cold and flu and common injuries. In my case, I had a sinus infection, and then severely sprained my ankle, making me unable to get out and about very well for the past several weeks. I can’t express how frustrating it feels to be bested by such mundane issues when I’ve worked so hard to craft a life within extraordinary and rare parameters.

So I’ve been hermitting, watching the grey sky and swaying, bare branches on the trees outside my window, feeling frustrated and alone.

But I have to say, as much as I am significantly displeased to be dealing with muggle sickness, it has provided a little window, a small ray of light.

When I tell people that I’m dealing with a really bad sinus infection, they know exactly what I’m talking about. When I say that I severely sprained my ankle and can’t fully walk on it yet, they are able to understand exactly what I mean. Perhaps not the nuances of how those things interact with my existing symptoms, but still. They are equipped to be able to make sense of it.

And that gives me a lot of hope. We tend to think of people who deal with chronic illness as being separate from those who don’t live with it. We tend to think that there’s no way others can understand.

To a certain extent, that’s true. None of us can truly understand each other’s unique experiences. But there is a middle ground, a ground where some much needed empathy can take place.

Every woman who has ever gotten her period knows what it feels like to have to push through tasks on limited energy. They know what it feels like to have to plan for something unpleasant on a regular basis, making sure they’ve packed tampons or pads, and perhaps some advil. Many deal with overwhelming cramping each and every month and associated symptoms such as migraines, fatigue, muscle and joint pain and stomach problems.

Every person with a food allergy or intolerance knows what it’s like to have to plan meticulously – checking for ingredients constantly, calling restaurants in advance or having to constantly ask for breakdowns of ingredients. They know what it’s like for simple things like grabbing a bite to eat with friends to not be so simple.

Every person who has ever injured themselves and needed some time to heal before being able to resume their regular activities knows what the experience of having limited ability is, at least for the time period that they were injured. It isn’t such a great leap for them to extrapolate from that and imagine what it might be like for that experience to last every day, forever. The same goes for every person who’s ever been sick.

So while we don’t all experience chronic illness, pretty much every human being has experienced something that can help them begin to understand what it’s like.

And in a time when the world feels so divided and so full of terrifying, virulent distrust and hate for anyone perceived as ‘other’, I think we can use all the connection and understanding we can get.

]]>https://saltedbrownies.com/2016/11/16/from-isolation-to-connection/feed/0downhillsaltedbrowniesHalloween: What gives you goosebumps?https://saltedbrownies.com/2016/10/31/halloween-what-gives-you-goosebumps/
https://saltedbrownies.com/2016/10/31/halloween-what-gives-you-goosebumps/#commentsMon, 31 Oct 2016 18:27:17 +0000http://saltedbrownies.com/?p=586It’s Halloween! The time of curling up on your couch with a cup of tea, scrolling through all the pictures of your friends dressed up in costumes as they go out partying… well, maybe that’s just me.

Now, to be clear, from here on out I’m talking about the mostly secular version of the holiday. The one that has emerged over time, as traditions that originated from various religious and cultural rituals and beliefs merged together into a celebration that involves pumpkins, costumes, trick-or-treating, an emphasis on death and the supernatural, and an overall sense of ‘spookiness’.

Over the past month, we’ve all been confronted by ‘scary’ images as haunted houses and other halloween themed activities are advertised and decorations of severed limbs and cobwebs appear.

In marketing geared towards children, grotesque characters often make an appearance in the form of hunched over individuals, intense scarring, blood, missing limbs, wrinkles, crooked teeth, and bedraggled hair. In marketing geared towards adults we see similar characters stripped of their comedy and often in the process of performing deviant acts, shown alongside blank, staring faces, insensible screaming, and straight jackets.

These are the images that we, as a culture deem to be scary. More than that, we classify them within the genre of horror.

And that’s fine, as long as you don’t think too much about it.

But I can’t help noticing that these depictions of what our fears are supposed to be all seem to centre around themes of disability, aging, mental and physical illness, and death.

In many ways, I can understand that. It is a basic human instinct to be wary of the unfamiliar and the different. It is also at the very core of our collective being to shrink from death in our endeavour to survive.

But we aren’t cavemen anymore. We are living in an age of medicine where sickness often doesn’t mean contagion or death. One can be chronically ill and live with their condition forever. We are living in an age of constantly evolving mobility technology, where a differently structured body should not have to result in isolation. We are living in an age where people are living longer, and their wrinkled faces are something that we can and should aspire to. We are living in an age where we are increasing our knowledge and understanding of mental health conditions, one where we actively work to reduce the stigma.

Even death – have we not figured out by now that we’re all going to die? Can we not focus instead on making the experience less isolating and traumatic for ourselves and each other?

As I type this, I feel reasonably confident that most of us would not directly equate the ideas of disability, age, and/or illness, with fodder for a horror movie. I have faced many reactions as I’ve gone out and about in the world with a variety of mobility aids and the most extreme looks I received were those of discomfort and pity with a side of judgment. My simple appearance on a street corner has never been greeted with a gasp of fear.

But still, I have never seen anyone question the idea that a heavily scarred woman without legs belongs in a haunted house.

So, while I believe that we, as a society, have evolved to the point where we no longer consciously associate these things with outright horror, I do think that we still experience that underlying fear. I think that’s where those reactions of discomfort and pity stem from.

There is so much to be celebrated about Halloween. When done responsibly, getting dressed up in a costume can lead to greater understanding, empathy, and the chance to discover new things about oneself. As children go door to door and meet their neighbours, a sense of community can be established. The fact that we buy candy with the plan to give it away to strangers is fairly beautiful within itself.

And most of all, it’s fun. It’s fun to get that adrenaline rush when we’re scared inside a safe space. It’s fun to paint our faces and wear something that we normally wouldn’t. It’s fun to do all of that with our friends and family.

But as we celebrate today and watch the trappings of the holiday fade away within the next week or so, maybe we can take a serious look at what messages we are putting out into the world and absorbing.

And maybe we’ll be able to find the beauty in our scars, in our wrinkles, and in our unique bodies, instead of the horror.

I like acknowledging anniversaries of events. I’m not generally organized enough to actually plan something for the specific date, but I do like to take stock of the time passing, what has stayed the same and what has changed.

One year and a week ago I was in Baltimore. I probably would have been feeling pretty scared except for three things. Firstly, I was really out of it. There was a reason that I needed neurosurgery, and that reason kept me fuzzy, submerged in a haze of pain, fatigue, and other fun stuff.

The next reason is that I had something else to focus on – my family and I had forgotten my suitcase in Ottawa, and the surgery was in Baltimore. So around this time last year, my wonderful mother was running around Baltimore, taking pictures of articles of clothing and sending them to me as I essentially grunted in response. It was great.

The last reason is the most important one. I was in the midst of being both overwhelmed and incredibly supported by you, collectively. This surgery was not covered by OHIP, and it cost a lot of money. An insane amount of money. And I only had 3 weeks notice to get everything ready before the procedure was going to happen.

I created a go fund me page and the response absolutely blew me away. The outpouring of support, both in words and dollars, was more than I could ever have imagined. After going through 4 years of fighting alone for a diagnosis and proper medical care, all of the sudden having hundreds of people supporting me, on my side, was a truly indescribable feeling. At that point, I wasn’t even thinking about the surgery itself and what might happen afterwards. I was completely immersed in a feeling of awe, surrounded by more love than I knew existed.

I don’t remember much from the morning before the surgery. I remember my parents, teary eyed as they were told it was time for them to leave. I remember saying something that I thought was witty to try to get them to laugh. It probably wasn’t helpful. I remember being wheeled in to the OR and hearing the razor that would shave the back of my head start to buzz. And then the next thing I remember is waking up to my parents faces, voice scratchy from the intubation, saying ‘hey, I had surgery’ and them saying ‘sweetie, we had this conversation already, when you first woke up’.

I had been told that I might not notice any improvements in my symptoms for a couple of months, and there was no way of knowing how much my ability level would change. We did know that I was dying without the surgery, so it was a no brainer, pardon the pun. But I was prepared to wait and see, and be happy with whatever little improvements I might gain.

That night, still hooked up to a room’s worth of machinery and very high on pain medication, I managed to walk down the hall and back independently. That was more than I had been able to do for at least 3 years.

Now, one year later, I can tell you that the surgery was a huge success. More than a success. Not only did it save my life in the literal sense, but it gave me the opportunity for a new life beyond what I had thought would ever be possible for me.

I took some time away from writing as I recovered – physically, mentally, and emotionally. I thought I needed to get a handle on what my new realities were. I wanted to know what my baseline was, ability-wise. I wanted to have a plan, to know where I was at now, and to know where I was going. I wanted to feel a sense of security before opening myself up to the world again.

And I do feel secure. But not in the way I expected.

I trust my body to be unpredictable.

I trust my ability level to change.

I trust that I will always want to do more than I am capable of at any given time.

I trust that I will try anyways.

I know what I want to do, because I know what I care about.

And I know that there is a lot of love and beauty in this world, just waiting to be called into action.

Really, I couldn’t ask for any more security than that.

So I’m back. Salted Brownies is back. And with my current level of ability, I plan to work towards my goal of starting conversations about chronic illness in as many ways as possible. Through writing, music, comedy, drama, public speaking, film, and anything else that comes to mind. If you want to work on something with me, let me know!

Because if I trust anything right now, it’s that I’m ready.

P.S. Thank you all, from the bottom of my heart, for helping me get to this point. There will never be enough thank yous to truly express my feelings, but I’ll keep trying regardless.

]]>https://saltedbrownies.com/2016/10/18/im-back/feed/4neurosurgery-clipart-5452092986dd098f1bc39df23271d1ae334d2bb94ca8dsaltedbrowniesAfter The Rosehttps://saltedbrownies.com/2016/04/07/after-the-rose/
https://saltedbrownies.com/2016/04/07/after-the-rose/#commentsThu, 07 Apr 2016 17:00:20 +0000http://saltedbrownies.com/?p=566I’ve never really watched ‘The Bachelor’. I’ve seen the odd episode here and there, but my TV watching is mostly confined to Netflix, and they don’t stream much in the way of reality TV.

Still, I can’t seem to get the phrase ‘after the rose’ out of my head.

On the show, people are put into a very intense, extreme situation where they are completely and utterly focused on one goal. One person will eventually achieve that goal; they’ll win the TV show and experience a flurry of fame and excitement, and then it will be over. They’ll be released back to real life, and will have to adjust to entirely new rules, or a lack thereof. The reasons that drove them are gone – they won. It’s no longer about winning, it’s about living.

That’s a huge adjustment. Even though the entire bachelor experience was probably only a year, it was a whirlwind year where fighting became a way of being, and after the rose everything is different.

It think that’s a fairly accurate comparison to how I’m feeling, how I’ve been feeling.

My surgery was over 5 months ago. I received my official diagnosis almost a year ago. For 4 years before that I was fighting tooth and nail to reach this point.

I kept saying that I knew I wouldn’t be cured, that I’d still have issues, but I just needed a leg up, a chance. I would have to live my life differently, but I would be able to live my life.

Thanks to the generosity of so many people, I was given that leg up. I’m not completely healthy or able, not by a long shot, but I’ve been given that chance.

And now, with the 6 month recovery period almost done, I find myself searching wildly for that sense of purpose, that fire that sustained me.

I’ve always been sustained by fire. Before my symptoms started to overwhelm me, and even after for a while, everything in my life was about pursuing a career as an opera singer. It was the motivation behind the majority of my decisions, and I was always striving towards that end goal, my next steps clearly illuminated by the flames.

After I became so ill that I could physically no longer sing, my fight, my purpose, changed. It was all about making the best of what I had, and making what I had better.

And now, I sit here, confused. I have dreams, I have goals, I even have plans. But everything feels so uncertain. My next steps aren’t illuminated. I am constantly terrified of making the wrong choice and ending up in the same position I was in a year ago.

I want to do, and I don’t want to do. I want to push myself and I’m scared to push myself. More than that, I don’t know how to push myself, or where to push myself.

I’m not certain about what I want to do. I’m not certain of what I’m able to do. I’m not certain of what I will be able to do in a year or two, or five.

I don’t know how to go about doing. I labour over my resume, trying to mask the empty years. I search for people I can contact and feel self-conscious – my circle has shrunk so dramatically over the past several years that I no longer have that outer circle of acquaintances I can casually connect and network with.

It’s hard to get back on the treadmill. It’s hard on personal, emotional, and psychological levels. It’s hard on practical levels.

I feel lost, confused, and frightened. I have spent many hours staring off into space, trying to think things through, to plan. To find that purpose and run with it, never looking back.

But I also feel confident. I feel secure. I may not know exactly what my next steps are, and it may be incredibly difficult, but it feels like a chance, an opportunity.

When everything in your life is focused around one single goal, it’s easy to develop tunnel vision. Fire builds, but it also destroys.

Right now, my field of vision is wider than it has ever been and it’s overwhelming – sensory overload.

It’s also exciting. It means that there is so much possibility, and I have the chance to make decisions and explore worlds that I never knew existed.

Life after the rose isn’t easy. The euphoria fades quickly and you’re left out in the cold.

But it’s life. Of course it isn’t easy.

I’ve always liked the expression that when one door closes, another opens, but that doesn’t feel quite right for me.

A door has closed, but I see millions of doors and windows in front of me. I see buildings filled with countless doors and windows. None of them are open, but that’s okay. It’s up to me to open them and walk through. I get to choose which of them I want to explore.

And after all, having the ability to choose is the real rose that I fought so hard for.

]]>https://saltedbrownies.com/2016/04/07/after-the-rose/feed/2Rose-2saltedbrowniesBodies and Words and Terms – Oh My!https://saltedbrownies.com/2016/01/31/bodies-and-words-and-terms-oh-my/
https://saltedbrownies.com/2016/01/31/bodies-and-words-and-terms-oh-my/#commentsSun, 31 Jan 2016 04:38:41 +0000http://saltedbrownies.com/?p=548The other day, I forgot that I was wearing my neck brace as I entered a meeting. I was immediately asked what happened and I fell into a knee jerk response that I wear it to protect my spine as I heal from surgery.

I told the truth, but it felt like a lie. I do wear the brace to minimize jostling as my spinal fusion sets, but I also wear it to support other parts of my spine that weren’t operated on, and that aren’t quite stable enough to hold their own.

As I thought later about what I could have said instead, what would have felt more honest, I struggled to come up with anything remotely concise. Before the surgery I would say that my head was floppy and the brace held it up. But now I have metal rods and plates and bone to do that.

And yet, I still sometimes need the brace. I still have Ehlers Danlos Syndrome – something that isn’t going away and that can effect every part of my body.

I could say that I have a chronic condition and need the extra support. But that doesn’t feel right either. That doesn’t acknowledge the unique experience of recovery. The success of the operation, the improvement of my symptoms, the swift turn my life has taken from a downwards spiral of dysfunction towards potential, hope, and choice.

There isn’t a word or a term for patients with chronic illness who conquer an aspect of their condition. Their lives might be dramatically different, but they are still faced with the same binary definitions – healthy or sick, able or disabled.

I don’t know how to categorize myself. I am much more able than I was before. The metal in my skull and spine are providing more support than my neck brace ever could, and are allowing me to appear more or less ‘normal’.

So maybe I can be normal? Maybe I can cross over into the more or less healthy category? The able category? After all, that’s how I appear. Unless I wear my neck brace, no one is going to offer me their seat on the bus.

Except I’m not cured. The surgery was a structural fix to a structural problem caused by an underlying faulty system. And that system hasn’t changed. It still gives me trouble, and will continue to do so.

It shouldn’t be such a big deal, this lack of language, but it feels very stifling. It feels as though I have to choose a category, even if it doesn’t quite fit, because everything has a label.

Race. Nationality. Gender. Sexuality. Ability.

We even separate between mental illness and physical illness – as if mental/emotional symptoms exist separately from physical symptoms.

Maybe, then, I shouldn’t work too hard to find an explanation. Maybe it’s a good thing that no neat label exists.

We have these perfect black and white categories, but the reality is that most of us are grey, fitting somewhere in the middle.

According to my quick google search, a disability is defined as ‘the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, developmental, or some combination of these’.

And yet, we don’t generally consider someone who sprained their ankle as disabled. We don’t often consider near-sightedness a disability. We don’t label someone with poor coordination as being disabled, or someone who experiences mood swings, or someone who is sensitive to loud noises or bright lights.

Most of us have some sort of quirk, something different about our bodies. Sometimes those things can impair us. Sometimes mildly and sometimes severely.